Boy born with 'two faces' because of 'Sonic the Hedgehog' gene
The parents of a boy born with two faces have celebrated their son's strength after he defied the odds to thrive with the 'Sonic the Hedgehog' gene.
Tres Johnson, from Missouri, has what's known as craniofacial duplication, and the condition is so rare that it affects just 36 people worldwide.
It is caused by the Sonic the Hedgehog (SHH) gene which deforms the growth of the human skull and comes with a life expectancy of just ten years.
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However, Tres has defied the odds to celebrate his 18th birthday, despite doctors repeatedly warning his parents Brandy and Joshua that he was likely to pass away long ago.
As reported by The Sun in 2017, the teenager suffers from seizures and cognitive delays and was born with a cleft, two separate nostrils, a head with an unusual, duplicate shape.
Tres' mum Brandy, 40, who is his full-time carer, said at the time: "When he was born he had such a large cleft that it went up into his nasal passage and you could see into his sinus cavity as it was all open.
"His one eye looked like it was bulging out and the other sucked in, because his eyes are further apart he sees peripherally instead."
However, thanks to medicine, his condition has vastly improved and his parents said that instead of having 400 seizures a day, cannabis oil has reduced that number to just 40.
His physical appearance has also been altered to aid the teenager, and he has had an operation to close his cleft and reshape his skull.
Brandy explained that it was a difficult experience seeing her son for the first time as a baby and said: "When they bought him into my room he was hooked up to a carrier box with all of his monitors, the only thing I could touch was his leg.
"Doctors weren't going to sustain Tres and planned to let him pass if my husband hadn't fought for him.
"Once I found out he was here and still alive that was all that mattered to us, we were always in it for the long haul."
The mum explained that it was her decision to research and use cannabis oil that made a world of a difference to her son's health.
"Four years ago, we were told there was nothing more doctors could do for him," Brandy said in 2017.
"I did a lot of research and the first week using Cannabidiol his seizures went down to under 40 a day, in over two years he has had over a 90 percent reduction in seizures.
"He is cognitively improving and his size more than doubled, he was under 40lbs and now is pushing 34kg, he is constantly growing stronger and smarter.
"Using cannabis oil is the best decision I ever made."
Brandy explained that she's sadly had to deal with a lot of cruel comments about her decision to fight for her son's life, but his survival and comfort remains her number one priority.
She explained that while he is developmentally at the age of an infant, he is improving in all areas, but the family have struggled to find medical assistance because Tres' condition is so rare.
The family are now hoping to find ongoing help with their son from medical professionals who treat him as' a person and not a case study.'
"One offered us a 'miracle surgery' to make him look normal, but I don't care about how he looks, what’s important is he is alive and comfortable," Brandy asserted.
You can keep up with Tres' journey on Instagram.
Topics: News
Emma Guinness